Expert: Mary Gordon - 12/3/2010

Question
My father has level 7 Alzheimer’s, had been in hospital for a month now and we've been told earlier this week his life expectation is 'days'.

He is receiving no further medical intervention now (family decision), is very weak and very very thin outwardly, very drowsy most of the time with a little movement in one arm. Has not taken on food or water other than swabs for mouth since last Sunday (5 days)... there is still some urine so kidneys must be working at least a bit although his drosy state suggests that is struggling.

I am trying to prepare myself mentally for when the end comes and I really want to be at beside when it does, but I work a couple of hours away.

I know there is no accurate gauge but based on what I have said can someone give me an expectation as to what 'days' means, feels like I am just waiting for a call and I'm hating it... I feel guilty saying it but I just want this to end, l lost him technically to the condition 12 months ago and I am hating seeing him in the state he is.

Thanks for any help or guidance

Max

Answer
Hi Max, I know this is a very difficult time. We went through it with my mother in law who survived to the very end of her dementia. Her final spiral lasted about 5 or 6 weeks, so I know all too well how gruelling the watching and waiting can be on everyone.

As he moves towards the end, he will sleep more and more until he lapses into a frank coma and won't be readily roused. His body will become cooler and his blood pressure will lower. His pulse may become irregular, or slow down or speed up. His skin colour will change as his circulation diminishes - often noticable as pale or bluish lips or nail beds. He may become clammy and perspire a lot. His breathing may change, becoming more rapid or laboured. Congestion may also occur causing a rattling sound. His urine will get darker and darker as it is more concentrated from dehydration, and then stop entirely as kidney's shut down.

In the final phase, he may have a burst of alertness, energy or agitation. It's usually short, and the prior signs become more pronounced. As death approaches, breathing becomes more irregular and often slower. Youi may see "Cheyne-Stokes" patterns, which are periods of rapid breaths followed by periods of no breathing at all. The rattling from congestion may become quite loud.Its very common for the person to be breathing continuously through a wide open mouth, and not to be able to talk at all.

His hands and feet may become mottled - blotchy and purplish and work its way up the arms and legs. This is a sign circulation is getting very poor. his extremities will feel cool to the touch, and he won't be moving around at all.

He may be able to hear right to the end, but given that he has dementia, his brain damage may preclude him really knowing what is happening or who is with him. It's likely merciful, as he can't torture himself with regrets over the past, nor be frightened of death.

Although not all people show all of these signs, many of them are typically seen. I know you know that the reason for the tradition of "keeping a vigil" when someone is dying is that we really don't know exactly when death will occur until it is obviously happening. If you wish to be there when death occurs, holding a vigil at the bedside is part of the process.

If he is in palliative hospice type care, staff will have seen this many times, and should be able to call you when the end is getting close. Especially from end stage dementia, death can be a slow and gradual process.

My husband (an only child) did spend the last day or so continuously by his mother's side, holding her hand. Whether or not she knew he was there mattered less than his feelign he was doing everything possible for her comfort, both physically and emotionally. He did talk to her - he told her everything in his heart, and said everything he felt he needed to say to make a final peace, which he was glad about later. Her end was very quiet and gentle.

You want to be able to look back on this time and have no regrets. You have to look at this as the slow going out of the tide. He's coming into that sacred space between life and death where time doesn't matter. Part of the vigil is just to be there and be totally present in the moment, and totally still  (i.e. shut off your racing brain). It can be a truly meaningful and transforming experience - and a priviledge.

I totally understand your conflicted feelings of guilt. My mother in law spent the last two years of her life in the final stage, and it was her own worst nightmare come true. We prayed for her release - and did feel guilty. If we could have restored her to any quality of life, we would have moved mountains, but there was nothing anyone could do. It was gruelling. Like having a body laid out without the closure of a funeral - and so much worse, given that we know she would have been horrified to live on in that state. We were relieved when the end came, although it does sound awful to say that.

Like you, we had done our grieving over the years her dementia destroyed her, and by the end, there were almost no tears left, other than to regret something so miserable and undeserved had happened to a lovely person.

Hang in there. Peace is coming for him. Hope this helps.

Mary